St. Louis Children's Hospital Magazine: Summer 2023

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StLouisChildrens.org/Giving

Dear Friends,

Tanya L. Waskiewicz

Chief Development Officer, St. Louis Children’s Hospital

Dear Friends,

I hope this magazine edition finds you well as we are heading into the warmer months. It’s such a wonderful time of year as we watch the world come to life all around us. It also means the children who are currently calling St. Louis Children’s Hospital home will finally be able to spend more time outdoors in the Olson Family Garden. Spaces like the garden and playrooms make a big impact and give our patients and their families a sense of normalcy.

Speaking of impact, we’ve included an overview of all the amazing things the Foundation was able to accomplish with the help of generous donors like you — more than 9,400, to be exact. The hospital was busier than ever in 2022, and more than 113,000 children were treated in our facilities and through our many community programs. Through our Family

Care Fund, we assisted families who needed help with meals or transportation to ensure their children were getting the best care possible and that families could stay together during treatment.

And did you know that our Center for Families — which is open 24/7 and provides families with laundry, showers, snacks and respite from the bedside — saw more than three times the number of visitors in 2022 as in 2021? Thanks to donors, the Foundation was able to support these families during some of their darkest days and help us fulfill our mission to do what’s right for kids. When we talk to patient families about their experiences, parents and caregivers almost always mention the Center for Families and the impact it had on their physical well-being, their mindset and their overall experience.

I am thankful for everyone who ensured the patients and families who came to St. Louis Children’s were able to get the most personalized care they were seeking from one of the nation’s best children’s hospitals. My hope is that you will help us continue to make an impact on the patients and families we serve. Our donors’ commitment to St. Louis Children’s Hospital Foundation is nothing short of awe-inspiring, and for that, I am incredibly grateful.

Warm Regards,

Tanya L. Waskiewicz

St. Louis Children’s Hospital Foundation

Editor: Janelle Ammel | Janelle.Ammel@bjc.org

This past fall, St. Louis Children’s Hospital became an official Spirit of Children hospital partner. The philanthropic program of Spirit Halloween stores raised $17 million nationwide this past season and granted $45,068 to St. Louis Children’s Child Life Services Department.

13-year-old Minah raised $500 by selling handmade dolls to her family and friends. She chose to donate her profits to St. Louis Children’s Hospital to support the sickle cell disease and hospice programs. Her family was beaming with pride when Minah presented the check to St. Louis Children’s.

The St. Louis Children’s Hospital

Ambassadors were proud to host their inaugural cornhole tournament presented by Stifel at the Armory STL. The Ambassadors is a group of young professionals from across the St. Louis region who are committed to improving the lives of patients and families at St. Louis Children’s. The event raised more than $11,000 for the hospital and had more than 100 attendees.

For the past three years, GL International Realty, a local real estate company owned by Gloria Lu, has done a year-round fundraiser that supports St. Louis Children’s Hospital. In 2022, the company raised $10,000, bringing the total amount raised to $25,888!

In February, guests saddled up for the Blues for Kids “Country Roads” Casino Night benefiting St. Louis Children’s Hospital. The night kicked off with dinner, where St. Louis Children’s patient Henry showed off his dance moves. After dinner, four other St. Louis Children’s patients announced the Blues players as they made their way to the casino tables as the night’s celebrity dealers. Thanks to all the generous cowboys and cowgirls who attended, more than $150,000 was raised for St. Louis Children’s!

8,651

CARE COMMUNITY

Patient families who received assistance through the Family Care Fund

2022 year in review

IMPACT REPORT

14,039

Children served through community programs

RESEARCH

& DISCOVERY

13

Research studies funded, tackling the most prevalent areas of serious childhood illness — cancer, congenital heart issues, lung conditions and immune-based disease

Supported the best and brightest through

Endowed Chairs

4 Medical Fellowships

4 Diverse Nursing Scholarships

3 Nursing Scholarships (Susan Goddard)

Thanks to the 9,457 donors who provided more than $27 million in funding to St. Louis Children’s Hospital

$27,590,000 $39,570,000

Breakdown as a percentage of sources of dollars raised by our three campaign pillar areas*

Breakdown as a percentage of grants to the hospital by our three campaign pillar areas

Research & Discovery

113,712

2,483

Trips made by the Transport Team

4,735

84,776

8,981 Visits to the Center for Families

Kids treated through our Healthy Kids Express programs

14,285 Expressive Arts Therapy sessions provided

Visits to the inpatient and sibling playrooms and teen lounge + bedside Child Life sessions

New Approach Will Seek Answers for Rare and Unknown Diseases

One family continues to advocate for their children living with shared rare condition

SiblingsLylaandKaydenwerebothdiagnosedwitharare disease that would benefit from more research to help shape statistics and remove the unknowns.

When you look at 4-year-old Kayden, you see a very busy third child who loves hockey, superheroes and his family. What you don’t see are the medical rarities he lives with every day.

Kayden’s mom, Kristin, notes her third pregnancy was textbook normal. Kayden was born at 38 weeks at a local hospital, but within 20 minutes of his birth, the delivery room was full of uncertainty. The nurse noticed a sacral dimple, an indentation on the lower back. Most sacral dimples are harmless and Kristin’s middle child, Lyla, was born with one too, so she and her husband quickly dismissed their concern. However, in Kayden’s case, the nurse saw another dimple above it. Kristin remembers the panic that took over. There was talk about their new baby needing surgery right away and that he might never be able to walk. The medical team took Kayden for an ultrasound on his spine and did an abrupt about-face — telling his parents it was fine and to follow up with his pediatrician in a couple of months.

His parents weren’t comfortable with waiting, especially after the panic that had occurred hours earlier, so they called their pediatrician, who consulted with Washington University pediatric neurosurgeon Jennifer Strahle, MD. She requested a brain and spine MRI. Kayden’s brain was cleared as normal, but the imaging test revealed he had a dermal sinus tract, a channel of scaly tissue found along the body anywhere between the nasal bridge and the tailbone, as well as a suspected tethered cord.

Kayden’s medical team at St. Louis Children’s knew he needed surgery, but COVID-19 delayed the procedure until he was 13 months old. The pre-op spine and brain MRI revealed Kayden had developed Chiari malformation type 1, a rare, complex brain abnormality that affects where the brain and spinal cord connect. Kayden’s parents were shocked to learn he was living with two rare conditions. By definition, rare diseases are those affecting just one in 2,000 people, or even fewer.

His surgery to remove the tract and release the tethered cord was successful. But it also left his mom with a lot of questions. “Until you’re

thrust into the world of rare disease, you don’t understand the very limited knowledge that’s out there,” said Kristin.

Imagine her shock when her middle child and only daughter was also diagnosed with Chiari malformation in February 2023. Lyla, who is 8 years old, started having headaches in August 2022 and they aggressively got worse as the year progressed. Kayden’s medical team recommended she undergo an MRI to rule out something like Chiari malformation since it was so rare, but her results came back positive. Now, two of Kristin’s three children are being followed by the neurosurgery team at St. Louis Children’s to ensure they continue to thrive while monitoring their rare diagnoses.

St. Louis Children’s and Washington University are working together to create a groundbreaking approach to finding answers for kids like Kayden and Lyla. The Center for Rare, Undiagnosed and Genetic Diseases will be the first of its kind: a research center focused on increasing the diagnostic rate while simultaneously reducing the time spent waiting from diagnosis to therapy. The Center will be part of the Children’s Discovery Institute, driving pediatric discoveries to uncover what may now seem unfindable: lifesaving treatments and cures for childhood illnesses.

Families with children suffering from rare disorders spend years looking for answers. For Kristin, knowing this new Center will provide insight into the unknown for other families through research is one of the reasons she wants donors to understand the importance of making a gift: “Boosting knowledge and shaping statistics to help others is vital, and research is a huge part of that.”

To help more kids like Kayden and Lyla, visit StLouisChildrens.org/RareDiseaseCenter or scan the QR code.

Emergency Department Renovations Improve Patient Experience

A new look will make treating the community safer and more efficient

As the front door of St. Louis Children’s Hospital, the emergency department (ED) is the first stop for thousands of patients and their families each year. Centrally located in the heart of St. Louis, it’s also the only Level I Pediatric Trauma Center in the region.

In order to continue to provide safe and efficient, family-centered care and to better serve the community, St. Louis Children’s has begun a multi-phase ED renovation, partially funded by generous donors, that will create a welcoming environment while also establishing St. Louis Children’s as the preferred destination for pediatric emergency care.

The project will provide more space with state-of-the-art features that will result in faster and better treatment of patients needing emergency services. The first phase included converting some of the existing ED space into behavioral health–safe flex rooms, which increase efficiency as room utilization can be adjusted to accommodate an ever-changing patient population. The second phase, which began in December 2022, includes the relocation of the current outpatient pharmacy that sits adjacent to the ED to create a larger physical footprint for patients and their families.

With the new behavioral health pod, specially designed suites provide a safer environment for behavioral health patients, preventing access to equipment or other features that could be used to cause harm to themselves or others. Providing calmer spaces for these patients, and a more sheltered entry pathway, will help them, and patients visiting for other needs, feel safer. Children with behavioral health concerns who arrive at the ED have increased every year since 2016, and behavioral health is now listed among the top 10 reasons a child needs emergency care.

The second phase includes replacing existing, small triage bays with triage exam rooms that will allow for quicker management of low-acuity patients while also providing a more comfortable environment for patients and families during their visits. The ED entrance and current waiting area will also be reconfigured for better traffic flow, triage operations and safety.

This project will ensure we continue to fulfill our mission to do what’s right for kids while meeting the ever-changing needs of the patients and families we serve as the No. 1 children’s hospital in Missouri.

Inside the ED waiting room, there is a basket with free gun locks and brochures explaining how to safely store firearms. St. Louis Children’s has given out about 5,000 free gun locks to anyone who needs them, no questions asked, made possible by generous donors.

In addition to the locks initiative, St. Louis Children’s Hospital conducts gun safety screenings with all patients, including those in the ED. Clinical staff, social workers and violence intervention experts collaborated to develop a script free of judgment to initiate discussions on firearms access. They ask questions such as “Do you have access to a firearm where your child lives or plays?” and “How is it stored?”

Compared to the five years before the COVID-19 pandemic, monthly firearm injuries have increased all across the St. Louis area hospitals — replacing car accidents as the number one injury that causes deaths in patients ages 0-24.

Left: Therenderingoftherenovatedemergencydepartmentdepictsamorecommunityfocused environment.

Care Team Helps Family Navigate Leukemia Together

How a healthcare team went above and beyond to make their patient comfortable

In July 2020, 3-year-old Auggie had low energy and intermittent fevers and headaches. His dad, Sterling, also noticed that his skin was a different shade of pale his parents had never seen before, and that Auggie had the same bruise on his forehead for two weeks. At first, his mom, Sarah, thought it was allergies, but when Auggie went to his grandma’s house for a weekend visit and struck another fever and began vomiting, she decided it was time to call the pediatrician.

When they arrived at the pediatrician’s office, the doctor felt Auggie’s stomach and noticed that it was bloated. He also saw that his skin was bruised just from the car seat straps. He sent Auggie to the emergency department at St. Louis Children’s Hospital, where they began running tests throughout the evening. Like most 3-year-olds, Auggie wasn’t that fond of needles, but Child Life Specialists made the blood draws near painless and helped distract him from everything going on.

Later that night, doctors diagnosed Auggie with leukemia. The next day, his cancer was labeled as B-cell acute lymphoblastic leukemia — when the bone marrow produces an abundance of abnormal B-lymphocytes, a type of white blood cell that helps the body fight infection. For the next month, Auggie received treatment at Siteman Kids at St. Louis Children’s Hospital, which included several different oral and intravenous chemotherapy drugs, as well as oral steroids. He had a slightly enlarged and inefficient heart, in addition to his spleen and liver also being enlarged from the leukemia. His parents traded off staying at the hospital every two days, so one of them could also always be home with their other two children. After four weeks, Auggie came home to the great relief of everyone. “We made welcome posters, and his little sister celebrated by following him around for a week screaming his name and hugging him,” said his mom, Sarah.

In late August 2020, the family learned that Auggie was in remission. He continued to visit the hospital weekly for a few more months and now visits St. Louis Children’s monthly for checkups. In fall 2021, Auggie began playing soccer and later that year also started playing

hockey. In October 2022, Auggie’s chemo port was removed. Now 6 years old, Auggie can’t wait to go swimming in the lake this summer — one of the restrictions he faced due to his treatment.

Sarah and Sterling credit the nurses and Child Life Specialists at St. Louis Children’s for Auggie not being afraid of needles or the hospital. “He’s fearless,” said Sterling. “The staff went above and beyond — making sure he could take his medications without being forced and that he truly understood what was going on. They were always willing to accommodate us and whatever Auggie needed.”

Today, Auggie is getting ready for first grade and enjoys riding bikes, crafting and playing chess. He’s even played in local chess tournaments. His parents feel lucky to have such a wonderful team at St. Louis Children’s to help walk them through this process.

Thanks to our donors, the Child Life Services department is able to help more patients like Auggie during their visit. From bringing a patient’s favorite toy or game to their room to a visit from our facility dog, Casey, our Child Life team goes above and beyond to help make every patient and family as comfortable as possible — whether they’re inside our hospital walls or at one of our St. Louis Children’s Specialty Care Centers.

Left:AuggiegivesathumbsupaftertreatmentatSt.LouisChildren’sHospital..

Right:ChildLifeServicesmadesureAuggiehadplentyofactivitiestokeephimbusywhilegoingthroughtreatment.

RonaldDellbringge,center,presentshisgifttostaffatSt.LouisChildren’sHospital FoundationandtheSt.LouisChildren’sSpecialtyCareCenter–WestCounty.

Ronald Dellbringge describes himself as a typical kid growing up in South St. Louis County in the 1940s. Like other boys his age, he started collecting baseball cards around age 9. In those days, a nickel would buy a package of bubble gum that included five baseball trading cards. All the neighborhood kids had their own collections and spent time swapping cards and playing games to win more cards from their friends.

Ronald remembers keeping cards from teams like the St. Louis Cardinals and St. Louis Browns and players like Jackie Robinson and Joe DiMaggio away from his friends because those were considered prime collector’s items. He also recalls spending quite a bit of time every evening going over his collection — which grew to more than 1,000 cards — reading the backs repeatedly to memorize the player details.

But as he got older, the cards went into shoe boxes, where they sat for decades. About 10 years ago, Ronald was interested to find out if his card collection was of any value but couldn’t find anyone to buy them. Sports trading cards were no longer something the average person cared about.

That all changed when COVID-19 hit and the hobby underwent a historic revival. The pandemic created an abundance of spare time, and several social media influencers turned their followers on to sports memorabilia.

One day, in 2022, Ronald was watching the news when he saw a segment that caught his attention. A 1949 Jackie Robinson baseball card had recently sold for thousands of dollars figures at auction. While the large sum of money might have been appealing to most, there was another reason Ronald was so enthralled with this particular story.

He had the same Jackie Robinson baseball card in his own collection.

Now, his card wasn’t in the same mint condition as the one recently sold at auction, but it certainly got him thinking about the value of his own card collection again. He did some research and found an auction house willing to sell his entire collection. Months later, a large catalog arrived at his house that included his cards. The auction would last two weeks. Ronald and his wife, Sue, developed a system and followed the bids twice a day, once at lunchtime and again each evening. Each time they would check, the dollar amounts would increase. “I’ve never seen my wife get so excited,” said Ronald. “We couldn’t believe some of the prices these cards were going for.”

Ronald knew that he wanted to direct the money to a cause, and he figured that since he collected the cards when he was a kid, that money should go back to kids.

He frequently drove by the St. Louis Children’s Specialty Care Center – West County and decided to stop in one day to check it out. After taking a tour of the facility, he was so impressed that knew he wanted to donate his proceeds to St. Louis Children’s. His generous donation will help support the treatments and programs at The Specialty Care Center, an outpatient facility that features a range of pediatric medical services, both walk-in and appointment-based visits, while surrounding families in an uplifting and creative environment that reduces stress, promotes healing and provides a superior patient experience.

There are many ways to support St. Louis Children’s Hospital Foundation with your time, talent or treasure. To learn more, please visit StLouisChildrens.org/GetInvolved.

This 1948 Leaf Jackie Robinson #79 rookie card was sold atauctionin2022byRonaldalongwithseveralothers.

Thanks to Care Available ONLY at St. Louis Children’s, Lowen is Thriving

Multiple specialties working together ensure patients receive the best care possible

When 23-month-old Lowen woke up looking gray and lethargic, her mom, Cassie, knew something wasn’t right. The pediatrician sent the family to a local emergency department near their home in Fulton, Missouri. Lowen was severely dehydrated, her white blood count was extremely elevated and she needed to be transferred by ambulance to the pediatric intensive care unit (PICU) in Columbia, Missouri.

That night, the hospital confirmed Lowen was sick with E. coli, and she was diagnosed with hemolytic uremic syndrome (HUS), a rare but serious disease that affects the kidneys and blood clotting system, which she acquired as a medical complication.

After 10 days filled with kidney dialysis, subsequent kidney failure and five seizures, Lowen needed to see a pediatric neurologist, someone their local hospital didn’t have

ItwasaverydramaticfewweeksbutLowen’sparents,CassieandCJ,creditallthe teams—PICU,nephrology,neurologyandinfectiousdisease—whocaredforLowen 24hoursadaytohelpherrecoverfromalife-threateningcondition.

on staff. She was simply too unstable to remain there. St. Louis Children’s Hospital sent a pediatric neurologists to visit Lowen in Columbia and initiate the transfer to the St. Louis Children’s PICU.

Unfortunately, Lowen wasn’t getting any better. She was on 24-hour dialysis and was still extremely unstable. She had to be intubated and only a day later, her medical team discovered she had a blood clot leading to her liver.

While the blood clot resolved itself a few days later, she was far from out of the woods. Lowen’s dad, CJ, and Cassie were frightened as they watched their youngest child rapidly worsen before their eyes.

Washington University physician and pediatric intensivist Mary Hartman, MD, MPH, met Lowen and her parents and immediately knew that St. Louis Children’s would give Lowen the best chance at surviving. Lowen’s blood pressure was incredibly hard to manage, which meant that she was at severe risk for stroke and seizure, further organ injury and heart failure. But eventually, Lowen’s blood pressure began to stabilize. Dr. Hartman said that was the first sign that everything was going to be OK.

Lowen’s recovery was slow but after 43 days as a hospital patient, 33 of those at St. Louis Children’s, she and her parents finally headed home to Fulton. Lowen no longer has daily therapy, but still has lingering effects of HUS. She continues to visit St. Louis Children’s to follow up with the nephrology team, and her parents speak with her doctors by phone regularly.

Lowen’s case required the collaboration of multiple specialty care teams to provide 24/7 dialysis care, 24/7 continuous EEG monitoring and interpretation, and prescription of the best medications for this unique situation. St. Louis Children’s is the only hospital in the region that provides all of these necessary services to ensure Lowen was safe and made a full recovery.

Now a spunky 5-year-old, Lowen loves princesses, animals and mermaids. Cassie and CJ are so thankful for everyone at St. Louis Children’s who not only took care of Lowen, but also stepped in to support them while their family was miles away.

Parent’s Perspective

“If we had to describe St. Louis Children’s Hospital, I would simply put it as amazing. From the warm welcome we received from the staff to their advanced technology, we love St. Louis Children’s! We were educated on Lowen’s diagnosis and her treatment and we still keep in touch with Lowen’s PICU doctors. The multiple care teams treated all of us like family when we were a couple of hours from home and away from our own. We cried with them and we laughed with them. They were so good to our older daughter, Aven, when she would come and visit. Oftentimes moments, people and places become imprinted on your life. For us, St. Louis Children’s Hospital is one of those places, they are those people and Lowen’s diagnosis is one of those moments that changed our life. Now 3.5 years later, Lowen is doing great. She takes blood pressure medicine twice a day and we do regular blood pressure checks. We are forever grateful that we have a hospital relatively close to us that saved Lowen’s life. We will always recommend St. Louis Children’s Hospital. After all, they have a piece of our hearts.”

— Cassie, Lowen’s Mom